Development and validation of a health information system for assistance and research in gestational trophoblast disease

BACKGROUND: Gestational Trophoblastic Disease (GTD) comprises pathological forms of placental trophoblastic tissue proliferation. When benign, they present with hydatidiform moles, and when malignant, they are called Gestational Trophoblastic Neoplasia. With the growth of the practice of digital health, allied to updated therapeutic approaches, the Outpatient Clinic for Gestational Trophoblastic Disease has built a Health Information System (HIS), contributing to the teaching–learning binomial, as well as to self-care. METHODS: This is a cross-sectional and blind technological assessment research for developing SIS-Mola (Website for the medical team and the Application “MolaApp” aimed at patients with GTD). We used the Praxis management approach to manage the application creation project. In the tasks involving real-time chat, a WebSocket layer was created and hosted together with the project’s web services, which use the Arch Linux operating system. For the evaluations, we provided questionnaires developed based on the System Usability Scale (SUS), to determine the degree of user satisfaction, with objective questions on the Likert scale. We invited 28 participants for the evaluations, among ABDTG specialist physicians, doctors from the DTG Outpatient Clinic team, and the patients. The study was systematized according to the rules of treatment and follow-up in treating the disease. RESULTS: The tests were conducted from November 2021 to February 2022. The responses obtained on a Likert scale indicated reliability and credibility to the HIS, since the total usability score, measured by the ten questions of the SUS instrument, had a mean of 81.1 (clinicians), 80 (patients) and median of 77.5 for both groups. The sample was characterized according to the variables: age, gender, education, computer knowledge, and profession. CONCLUSION: Developing a HIS in the GTD Outpatient Clinic met the objectives regarding the rules of treatment and follow-up of patients. With these digital tools, it is possible to obtain data about the patient’s health, sending information through exams performed and appropriate treatments. The connectivity capacity allows agile care, saving time, costs and solving the displacement problem. The TICs generate natural efficiency for the organization in the flow of service and the formation of a database, improving the quality of the assistance. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-022-01916-4.